Saturday, August 26, 2006 7:02 AM CDT
**Update on 5th September Tuesday**
Had my tongue surgery yesterday! It went well and I am home. I was going to be in overnight...but I didn't bleed much and came out fine. My face is burnt though. My face is red and burning today. I am allergic to tape and I know that I had tape on my face while being intubated...plus I am guessing the powerful lights that they used for me in surgery....burnt me...man...It is sore today...and I will watch that no real damage has been done. You know when people have surgery done their eyes have to be taped down so that the lights don't make you blind. That is true you know. I work as a nurse in this area...so I wouldn't be surprised if the lights had something to do with my face since they were working on my mouth!
My tongue looks good. It is nicely stiched up and not too sore. A little bruised and red...but looks rather cool. Not too swollen and I can talk ok.
I will update more later.
Love Charisse
***
Well, I had my IVIG yesterday and all went well. I had a broken sleep last night and today I slept til 2pm which is not unusual with the effects of the IVIG. Poor Alan was up most of the night...well awake with Isaac who decided to wake at 3.30am and not return back to sleep. Isaac has been pretty full on today and Alan is tired. It is nice that Isaac is back in bed and praying that he will sleep the whole night tonight as tomorrow is church...and we don't want a habit of this.
I have been on antibiotics for a nasty mouth ulcer just by the corner of my mouth on the left. It has been awful. I am very prone to mouth ulcers. This one is big and has pus (yuck) and definitely needed antibiotics. I sure hope it clears up quickly. I have had it for a week and started antibiotics on Tuesday night. I am having oral surgery in 8 days and really need it to be gone...otherwise it will not be pleasant.
Yes, I am having a white spot removed from my tongue on the 4th September. It is too small to biopsy and we have been watching it...although I have felt paranoid and so we decided to get it taken off completely because it is a quick and easy surgery. I will have a light general anaesthetic and they will do a panendoscopy as well...a look around while I am asleep in my sinuses...just surveillance...I have had no problems.
As for my haematologist who went to Canada...I really miss him. Already I miss him and last night I had a tear or two. I get quite emotional as a result of the IVIG. And knowing that he is not around to deal with anything made me feel lonely and a little scared. It is weird that he is gone. We will be trying to build a good relationship with this other guy that I mentioned in the last update. he also worked with my old doctor and they know each other well.
It is Alan's birthday on the 5th September. We are having a party for him on the 2nd of Sept before my surgery. Also, Father's Day on the 3rd. Happy Father's Day Alan!
God has been good to us since Alan went part time. God has been providing what we need. It has been amazing really.
We have a new car on the way subject to finance..it is a Toyota Camery....very nice car....I am so vague and can never remember the model and year....but it is a good year and a nice car. With petrol prices going up, it will be more fuel efficient than our Ford Falcon was. Praise the Lord!
I may be seeing a sleep doctor to help with my sleep patterns. Not getting enough sleep and rest has been affecting me.
Otherwise, life is good. Prayer meeting every Thursday. It is nice to be in the presence of the Lord. Tomorrow at church we have a well known Australian singer there....her name is Aliki. It will be enjoyable.
Well, that is enough for now. Bless you all and have a great weekend!
Love Charisse
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Monday, August 14, 2006 8:04 AM CDT
*New Update*
Saturday 19th August 8.28pm
Hi again. I am just putting a small update from the entry below. So many things have happened all at once this week. On Monday my nanny quit and we had been working together for 5 months and a little more...I cried...because I was attached to her. If you didn't realise already...I am the type of person who gets quite attached to things....even my own car. My car is a 1989 model...nothing too fancy...but I love it..the thought of getting a new car makes me cry. Yeah, I can be a bit emotional. You really have to laugh sometimes. Ayway, so on Thursday we had a new nanny who, if we are happy after trialing her for a few weeks, we can keep for a couple of months. She is sweet. She is young compared to my "old" nanny. And it felt strange waking up and seeing her in the morning instead of the other nanny. You have to get used to the new nanny's way of doing things and she has to get used to me...but I think it will work out. My old nanny rang and asked whether we could keep in touch..so that was nice.
Ah yes, my doctor....I have had tears this week and felt quite scared about a new doctor. On Wednesday I woke with so much emotional pressure in my head, I felt that I should write an email to my haematologist who has resigned to express what I am feeling inside. My Psychologist always tells me that when there is an abrupt "finish" to something that you are left unable to express your grief and feelings. I have done a lot of unexpressing in my lifetime and I was determined to not bottle all this up as well. She adviced me that if writing an email or letter is what I do best...then to do it. She has given me advice when this stuff happens. So I wrote my doctor a letter/email and sincerely expressed the feelings, worries and concerns and thanks that I did not get to say at my appointment because it was all very sudden...and I was speechless! It has felt a lot better to express those feelings. I made sure Alan went over the email to check that it was ok. He said it was extremely well written.
On Friday Alan met with the transplantor here in Adelaide. Of course, he can be a normal haematologist as well and my doctor had mentioned that his personality was one very much like my current doctor. I had been extremely scared of this new doctor...and it has not helped that I have only dealt with the issue of transplant when seeing him and "talking" to him....I put that in inverted comas because my anxiety stops me from saying a word and I just stare at him the whole appointment! However, we have been searching for the right haematologist/oncologist to cover my care...and Alan talked to him about it on Friday. Apparently he was really open to everything and very understanding to the fact that we did not know about our other doctor leaving til the day...and at the end of our appointment. This guy is actually very nice and has smiled at me and has kept his distance..tried to make me smile in appointments when we have approached him about transplant issues...however, I struggle with that topic and it is unbelievable about how I react......the anxiety completely debilitates me. May be if I see this guy just as a consultant haematologist I would settle in better. And I felt relieved to hear that this guy actually treats about 3 other FA patients....and he is an adult haematogist! These are adults. Don't panic. He gave no details...confidentiality laws...but we were able to tell him (should I say Alan)..we were able to tell him all about FA Australia and may be, after he gives our details to these people, just may be...I will get to meet other FA adults in Australia...in Adelaide. It makes me feel better to know he has experience with FA. Anyway, it is a good sign that I am excited because so far whenever I have seen this doctor I have not been able to speak and have been full of anxiety...and have stayed far away...no examinations. But, that is a norm for me. I don't let a doctor do something until I feel like I can trust them. If I really don't feel comfortable with this guy, I will find someone else...so we will see...I have to get the courage up to go and "talk" with him again about normal consults...not transplant.
Well, the excitement doesn't end there...our car died on Friday night. Alan's Ford that is. And now we have to look for a new car! I want to thank our friends (won't mention their names). Thank you for sincerely helping us out in this issue with the car. It is greatly appreciated.
Well, I meant to just do a quick update...but I always get carried away.
Keep praying for me. Sleep is a problem right now...I am not getting enough. I don't fall asleep well.
Otherwise, update soon.
Love Charisse
*************
Monday 14th August
Hello All,
tonight I feel annoyed and I think I just need to vent a bit....again.
It has taken me so long to build relationships with doctors in the past. I have anxiety issues so much with doctors. From things that have happened in the past....from doctors/haematologists who have not known enough about FA. I have had a history with things happening to me with doctors. A medical error just after my brother's transplant, caused his death only a month after his transplant. There is so much mistrust with doctors/haematologist that has happened in relation to me. Doctors have not respected me and crossed my private bondaries without consent and caused me to feel insecure, afraid and upset. Then, finally, I found a doctor...my haematologist...after Isaac was born and he is alsmost 4 years old. This doctor...I won't say his name....but he has understood my emotional/anxiety and depression. He has taught me more about FA than I ever knew under any other doctor I have been with. He respects my boundaries with my body and has never crossed any lines. He has stood up for me with other doctors and put rules in place to protect me dignity. He has helped me conquere some fears and led me to trust him enough to finally allow him to examine me. I have trusted him fully with my bone marrow tests and my blood tests and anything in regards to transplants. I have become very attached to my haematologist. He said that he was committed to seeing me through the tough times.
Well, I had an appointment with him today. At the end of the appointment he announced that he is leaving and going to work in Canada....and he will not be available from the end of this week! I can't believe it! He always said that doctors need to keep in mind that I have extreme depression and anxiety issues and that my care needs to be especially organised and now this. I understand that life can change just like that....but I deserve to know what will happen to my care now. I don't want to do this alone. He should be lining me up with someone properly so my care can be continued satisfactorly. He has some people in mind...but I have never met them. Do they know FA? I am in the middle of decisions as to whether to transplant or not.....procedures and so on that need a haematologisst/oncologist to oversee. I have such an in depth history with doctors and with fear of doctors....to change doctors and not know who to send blood counts to or manage my IVIG therapy or pre-transplant testing.....all of this and I now am expected to trust.........all of this makes me feel so tired. I am infruriated with my doctor for not giving me notice and for not arranging my care or helping me with doctors. In this medical world...there are certain rules that one needs to go by....as a nurse I become shocked and perplexed and cross when someone cuts things fine and does not respect a patient to the full extent. A doctor may be cannot become too attached to their patient. But a patient who has a long term diseases definitely becomes emotionally attached to their doctor. And this is hard to break. He has been the best. He is a great doctor...compassionate, caring, knowledgable....and pro-active in my issues and understanding with how my anxiety works and protective of how other people treated me. I am devastated.
Besides that my permanent nanny rang today and quit....not for any reason that we have wrong with us....but for her own personality issues....and this also devastated me. There are so many changes and I cope badly with change. I find it a struggle.
I have to admit to you all. I have been severely depressed before this happened and Alan has now decreased his hours at work to support me and help me through this. We were starting to look into transplant more....into reproductive procedures and into many things with this haematologist and I find it difficult to just start with a new doctor who will need to learn about my unbelievable fear and anxiety and not approach me and scare me...this is hard.
Sorry about being so glum. Well I must sign off. I have a lot on my mind. Please, people..pray for me. Life if tough at the moment. Depression is debiltating and I don't know...sometimes it feels too much.
Pray for the new doctor...whoever she or he may be...pray I get through this.
Love you all,
Charisse
Wednesday, August 30, 2006
Monday, July 31, 2006
July 2006 entries
Saturday, July 29, 2006 7:40 AM CDT
***NEW PHOTOS***
Hello All,
long time no write! I have a bit to update on.
Firstly, I had a small medical issue that landed me in hospital for a couple of days, requiring some morphine for pain relief....things are still being "investigated" in regards to that issue...but at least things are better. I can be rather private about some things....some may know what I am talking about and some may not...but I am not going into any more details...just keep me in prayer. I may need surgery in relation to this issue..that is not yet set in concrete. Sometimes different issues with FA can be challenging and I have felt some areas to be very challenging lately....I am still trusting in Jesus for my miralce. He has been faithful to me even though sometimes it feels too rough. Although, there are many people out there who have had it more tough than me and you guys are really brave people.
Since my cat, Jemima died, I have actually felt miserable about her passing and it brought so many emotions out about death in general...I can be a pretty emotional gal sometimes...it has been tough! I really miss my precious cat. I don't know about you but when I was young...cats and kittens have been the only animals that have brightened my day and brought me joy...and it continues to have this effect...so not having Jemima around has been difficult. Obviously we have another cat, Matilda, but she and I never had the same "closeness" as Jemima and I did. However, I can't believe I am raving on about a cat..but it is important to me.
We got a NEW KITTEN! When Isaac saw the cat just before choosing..he announced it was a "daddy Jemima" and he "wants to take it back home"....and we called him Jerry. He is gorgeous and is only 9 weeks old. He is so sweet. He loves to be cuddled...which is just what I have needed....and Matilda seems to be taking him very well...no hissing or any type of really violent behaviour...she is still a young cat and loves to play...we can see them eyeing each other and getting ready to pounce...I am sure that they will "let go" and play properly soon. Matilda is such a rascal and always has such an "unimpressed" look on her face. Check out the photos of Jerry and Matilda in the photo section.
Also, because I have had a bit of a rough patch with feeling depressed...Alan took the week off and we went to Sellix Beach on holiday from Mon to Thurs last week. It was wonderful. I have never seen Isaac so happy...he was squealing...obviously so happy to be with just mummy and daddy and we were very relaxed the whole time...something that doesn't seem to happen with FA around...but we could forget about that and just enjoy. Alan was adding the pictures for me....so check if they are there...have a look...there are some lovely scenery photos of our Australian coast line....and hills in winter, sunsets and Isaac, Alan and I.....please have a look. We went to the beach and built sand castles even though it was so cold. We caught the horse and carriage over a jetty to Granite Island in Victor Habour and saw some whales! We went to Cape Jervis where the ferry leaves to go to Kangeroo Island. That is where the light house was and we took lots of beautiful photos...we checked out rabbit burrows together...Isaac thought that was exciting. We had a really good time together...just travelling and exploring and at night Isaac led us in many songs using his hand as a microphone and we cuddled up and watched a DVD after he was in bed....we just relaxed and had special family and couple time.
Anyway, please check out the photos because I will make sure Alan gets them there soon.
Please be sure to leave any messages in my guestbook. I find it exciting and encouraging!
I hope all of you who went to Camp Sunshine had a good time. I am sure that it was a mixture of feelings for many people!
Bless you and love you,
Charisse
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Saturday, July 8, 2006 8:19 AM CDT
Hello All,
WHAT an AMAZING weekend! It was awesome! This past weekend Alan and I traveled to Sydney and we attended a Christian Conference on Friday afternoon at the Acer Arena. Reinhard Bonki, an Evangelist with a powerful healing ministry in the Name of Jesus was speaking that afternoon! It was an amazing experience. I was still quite ill this weekend and was amazed that I survived! The message given by the Evangelist was powerful and I felt moved by the Holy Spirit! The prayer given to me also powerfully touched me and I was brought to tears...I knew the power of God was moving in that place Friday afternoon.
After this conference we headed out to Bondi where the Rodwells live. They had offered us a place to stay for the night. David Rodwell is 14 and he has FA....we have been chatting via IM and sometimes via phone and it was exciting knowing that we were going to meet! And it WAS! I had a great time. It was amazing! David, you are a great guy and I loved chatting with you! Cathy, Paul, Natalie...it was the greatest pleasure to be in your company and laugh and share! I cannot wait to see you guys again.....I felt heaps comfortable with you all!
On Saturday Ben Hilton who also has FA and he is 22 years old this month....he and his family joined Alan and I and the Rodwells for lunch. It was an amazing event....Ben, David and I got to spend some time together in our little groupee! Hehe...we got to chat....wow we chatted so much. It was great to meet other people with FA in Australia....this was an amazing event! Ben it was great to meet you and your family and I can't wait to meet you guys again.
David and I had an arm wrestle...everyone was cheering us on...boy David you are strong! Hehe.....I have to say that it was a good, decent arm wrestle....and for a girl...hehe...I am no weakling! Ha.,...still after a good fight...David won twice out of the three times and I won once...it was a close call though....great memories. Please go visit David's awesome site! The link is below..he is a great guy!
I am going to put some new photos of this great occasion in my photo section so check it out!
Love Charisse
***NEW PHOTOS***
Hello All,
long time no write! I have a bit to update on.
Firstly, I had a small medical issue that landed me in hospital for a couple of days, requiring some morphine for pain relief....things are still being "investigated" in regards to that issue...but at least things are better. I can be rather private about some things....some may know what I am talking about and some may not...but I am not going into any more details...just keep me in prayer. I may need surgery in relation to this issue..that is not yet set in concrete. Sometimes different issues with FA can be challenging and I have felt some areas to be very challenging lately....I am still trusting in Jesus for my miralce. He has been faithful to me even though sometimes it feels too rough. Although, there are many people out there who have had it more tough than me and you guys are really brave people.
Since my cat, Jemima died, I have actually felt miserable about her passing and it brought so many emotions out about death in general...I can be a pretty emotional gal sometimes...it has been tough! I really miss my precious cat. I don't know about you but when I was young...cats and kittens have been the only animals that have brightened my day and brought me joy...and it continues to have this effect...so not having Jemima around has been difficult. Obviously we have another cat, Matilda, but she and I never had the same "closeness" as Jemima and I did. However, I can't believe I am raving on about a cat..but it is important to me.
We got a NEW KITTEN! When Isaac saw the cat just before choosing..he announced it was a "daddy Jemima" and he "wants to take it back home"....and we called him Jerry. He is gorgeous and is only 9 weeks old. He is so sweet. He loves to be cuddled...which is just what I have needed....and Matilda seems to be taking him very well...no hissing or any type of really violent behaviour...she is still a young cat and loves to play...we can see them eyeing each other and getting ready to pounce...I am sure that they will "let go" and play properly soon. Matilda is such a rascal and always has such an "unimpressed" look on her face. Check out the photos of Jerry and Matilda in the photo section.
Also, because I have had a bit of a rough patch with feeling depressed...Alan took the week off and we went to Sellix Beach on holiday from Mon to Thurs last week. It was wonderful. I have never seen Isaac so happy...he was squealing...obviously so happy to be with just mummy and daddy and we were very relaxed the whole time...something that doesn't seem to happen with FA around...but we could forget about that and just enjoy. Alan was adding the pictures for me....so check if they are there...have a look...there are some lovely scenery photos of our Australian coast line....and hills in winter, sunsets and Isaac, Alan and I.....please have a look. We went to the beach and built sand castles even though it was so cold. We caught the horse and carriage over a jetty to Granite Island in Victor Habour and saw some whales! We went to Cape Jervis where the ferry leaves to go to Kangeroo Island. That is where the light house was and we took lots of beautiful photos...we checked out rabbit burrows together...Isaac thought that was exciting. We had a really good time together...just travelling and exploring and at night Isaac led us in many songs using his hand as a microphone and we cuddled up and watched a DVD after he was in bed....we just relaxed and had special family and couple time.
Anyway, please check out the photos because I will make sure Alan gets them there soon.
Please be sure to leave any messages in my guestbook. I find it exciting and encouraging!
I hope all of you who went to Camp Sunshine had a good time. I am sure that it was a mixture of feelings for many people!
Bless you and love you,
Charisse
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Saturday, July 8, 2006 8:19 AM CDT
Hello All,
WHAT an AMAZING weekend! It was awesome! This past weekend Alan and I traveled to Sydney and we attended a Christian Conference on Friday afternoon at the Acer Arena. Reinhard Bonki, an Evangelist with a powerful healing ministry in the Name of Jesus was speaking that afternoon! It was an amazing experience. I was still quite ill this weekend and was amazed that I survived! The message given by the Evangelist was powerful and I felt moved by the Holy Spirit! The prayer given to me also powerfully touched me and I was brought to tears...I knew the power of God was moving in that place Friday afternoon.
After this conference we headed out to Bondi where the Rodwells live. They had offered us a place to stay for the night. David Rodwell is 14 and he has FA....we have been chatting via IM and sometimes via phone and it was exciting knowing that we were going to meet! And it WAS! I had a great time. It was amazing! David, you are a great guy and I loved chatting with you! Cathy, Paul, Natalie...it was the greatest pleasure to be in your company and laugh and share! I cannot wait to see you guys again.....I felt heaps comfortable with you all!
On Saturday Ben Hilton who also has FA and he is 22 years old this month....he and his family joined Alan and I and the Rodwells for lunch. It was an amazing event....Ben, David and I got to spend some time together in our little groupee! Hehe...we got to chat....wow we chatted so much. It was great to meet other people with FA in Australia....this was an amazing event! Ben it was great to meet you and your family and I can't wait to meet you guys again.
David and I had an arm wrestle...everyone was cheering us on...boy David you are strong! Hehe.....I have to say that it was a good, decent arm wrestle....and for a girl...hehe...I am no weakling! Ha.,...still after a good fight...David won twice out of the three times and I won once...it was a close call though....great memories. Please go visit David's awesome site! The link is below..he is a great guy!
I am going to put some new photos of this great occasion in my photo section so check it out!
Love Charisse
Friday, June 30, 2006
June 2006 entries
Sunday, June 25, 2006 7:13 AM CDT
Friday 30th June 2006
***UPDATE***
Hello All,
I left last week's update on so if you missed what was happening you could catch up!
It has been a tough week this week. I have felt like I may have gotten a little better but still quite distressed with this very sore throat and swallowing problem. Also, I have been so lethargic. Today is the first time I think I have noticed a drastic improvement with my throat problem. It is less sore and easier to swallow...this is a good thing...however, on Monday I have an endoscopy scheduled just to look down my oesophagus for any nasties...this will help with my anxiety as well. it has gone through the roof! I am still on antifungal.
I had my infusion today. My levels last week of the IgG in the blood were really low and I am relieved I had my IVIG infusion today. I am praying I will not have a bad reaction. I tried to stretch the infusion back to 6 weekly, but with all this sickness and really low IgG levels....we are back at 4 weekly infusions. I should improve in the sickness level. Hoping my platelet count was only really, really low because I was really sick.
Isaac has been vulnerable all week..does not help when he sees me so distressed.
Also I have been really grieving over my cat...it has brought so much emotion about death out of my head...I have struggled with constant weeping during the day..the type where you try and stop it but it comes...
The autopsy of Jemima, our cat.....I can't believe what actually caused her to be so sick was this...it really made me angry and upset. She had a puncture wound in her intestine which had been there for 2 weeks from a foreign body...it had started festering and just became an out of control infection...no wonder no x-rays or ultrasounds could pick anything up...no wonder...we would have liked to have a go at fixing her...but we didn't know what was going on and she was getting really sick and we had already spent so much...I have actually felt regret about her dying...all I can do now is just let myself grieve...we will get another dear little kitten...we still have Matilda, our 3 year old cat....
So that is that......thanks for checking up on me!
Love Charisse
**********
Good Evening all,
it is Sunday night here. It has been a rough week. Firstly, my deepest sympathies and love to Brenda and her family. Robbie has now let go and is free of FA. Please support them and pray for them as they go through this hard journey. We love you guys.
As for an update on my family.....I want to talk about my cat...I know that my cat is nothing compared to that of which families are going through in losing their loved ones.,...so please know...for the sake of these families...I don't want to make any of this sound worse than losing someone you love......I am now going to update what happened this week in our familiy.
Our much loved cat, Jemima, died on Wednesday night after 5 days of being in hospital. Her wbc showed that she was seriously sick and we needed to open her up to see what it was...but were not guarenteed that she would live after all that....we had to let her go....we will find out what happened though..waiting for results...she was only 5 years old...Jemima has helped me throughout tough times with FA....sometimes an animal becomes your closest friend when you have down times...she cuddled me, let me cry on her and I loved her....I am very sad that she is gone. We told Isaac...the first night it didn't seem to register...but the next day he asked me and I told him the simple truth....he went real quite and leaned his head against his seat.....the only question he asked was "what about mummy being sick?"...my heart broke...I was hoping he was only referring to my cold...not the long term stuff and so tried to explain appropriately...poor sweet heart....I had to...... encourage him that we would go and buy a new baby cat for him.....that brightened his mood...but I have noticed some separation issues and I think he is grieving a bit over the cat. Poor love...Jemima was his favourite cat!
ok, besides that....I have been really unwell...let me give you the run down. I had ulcers in my mouth real bad. Well just over a week ago...I started getting a really sore throat and thought, "on no"...this has happened once before...in December...I got so sick with 40 degree C temperatures and in bed...not being able to swallow...I was so sick.,..well due to the ulcers and stuff I was on antibiotics...and then this happens...well my neck swelled up....I feel like my oesophagus is blocked off...I cough and throw things up...I can't swallow or eat properly...it has been unbelievably painful...rolling and crying on the floor.....rushed to the haematology clinic....platelets seriously down and scary......and my haematologist is off sick...other doctors unsure and being difficult...finally my son's paed helps out...my GP suspects fungal infection....but still really sick....finally my haem is back on board and they think it is a superficial fungal, candida...on antifungal and antibiotics.....if it is not better by Tuesday.,...on an antifungal that treats systemic infections...my neutriphils are 1300...praise God over 1000...but still low enough to make a fungal infection a little difficult...now if this big antifungal drug doesn't get rid of things...an endoscopy to see what is happening....and you know what I hate about FA...is that you always have to rule out a tumor.....FA patients always have some kind of cancer to check for...so treatment and diagnosis becomes scarier! I hate that....we just need to be safe....but because I have had this before and no difficulties inbetween...I am not jumping to any conclusions....but I still need to be careful.....I actually feel really unwell...faint and dizzy and my ears are piercing pain and have fluid on them and blocked...I still have a cold and a cough.....I have actually been unwell....so this is not unexpected and I have been on 4 lots of antibiotics...with a lower neutriphil count...fungal infections are to be expected...so I refuse to dwell on the worst...cancer...but it does worry me as it would anyone else. I just want to feel better and get rid of this pain....now my haematologist tells me that this type of candida that I have actually causes heaps of pain and they usually manage it with morphine...but I don't wish for that...another thing was to sedate me enough to make me less tense and lie in bed and rest for a week...but I don't want that either...hmm..what will my doctor think about all that this week.
So that has been my week....quite full on!
I have my infusion in a week...I extended my infusion by 2 weeks for the last 2 times...I hope that didn't make a difference with the infections I have had...I need to see my levels.....
Then in Two weeks we will be spending the weekend with an FA family in Syndey...the Rodwells...we are excited about that...we are also attending a Christian conference...Alan and I have not given up on the promises that we know and believe God has given us and the miracles He has promised us.
My sister looked beautiful today at 20 weeks pregnant!
Well, that is all for now....please keep Brenda (Robbie's mum)...in prayer. Please keep praying for Nicholas' miracle...keep Will in prayer with his trial....Ben Hilton doesn't have a tumor....YES! Ben Hilton is in Sydney, Australia...they had a terrible scare when he started having seizures...for a while there they thought he had a brain tumor...praise God it is not that...but demyelination of the neurons instead..I won't explain that....pleae pray for Nina Altmann who does have a bad brain tumor.......
I need to go...please pray for me.......
Love Charisse
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Sunday, June 18, 2006 6:29 AM CDT
Hello Everyone,
once again I thank you for your prayers....believe it or not I am sick again. I think I have re-caught something because I cannot swallow very well...it feels like I have a huge graze and apple in my throat and I have begun coughing more and feeling tired. I need it to go away...I have had enough. Although I should not complain as I know there are many FA families that are having a harder time than me at the moment. Alan and I are praying for those FAmilies. Please keep Robbie and Brenda uplifted in prayer. The last I heard, Robbie had taken a turn for the worst and I don't know where things are up to since the weekend...that family really need our support, love and prayer at the moment.
It is a relief to know that it is not just my immunity that is causing me to be suseptible to sickness right now. This is one of the coldest winters we have had in Australia for a while and almost everyone I know is sick. My mum and dad, my sister is actually quite unwell, Alan is also sick with this sore throat and cough....lots of people at church are away...everyone seems to be sick...not just mildly sick...but sick, sick. The GP did say there is a strain going around that is really putting people in bed even though they may not have an immune deficiency...so I am not the only one...It is amazing...I don't think I have seen so many people sick at the same time at winter.
Along with that, it seems that our cat, Jemima, has joined in on this sickness as well. She is actually seriously sick and yesterday had to be hospitalised. I know she is "just an animal" as some would say...but she is a very special part of our family and Isaac adores her! So of course it has made us all emotional dealing with her being sick. The worst part is that we don't actually know what is wrong with her yet....she was not responding to antibiotics at home and seemed to be declining....got severely dehydrated and ended up in hospital having IV therapy and x-rays and stuff....she may have something terminal now...they are not sure....but if she does...we may need to say "goodbye" to our family cat...as I said she isn't a person...but this is upsetting for us since we deal with so much emotion with FA and circumstances,,,this really hits your vulnerable emotions. I pray that she is going to pull through and have nothing too serious. I don't know! We first need to diagnose what she has before we can make a decision about anything! So she is still in hospital. We took Isaac to visit her today and he was really happy to see her (Isaac is 3 1/2 years old).
Well, please keep praying for FA families...keep praying for Nina, Robbie and his family, Nicholas who had some sniffles, Will in his trial, Ben Hilton in Australia (still trying to work out this probable tumor...and now querie infection in the brain) and Ryan who is going for a second transplant....there are plenty more..please keep praying for them.
Please keep praying for me...my mouth is still not healed completely from these ulcers....I have many appointments this week. I struggle with seeing FA families go through much and because I have FA myself I tend to feel very overwhelmed and extremely grieved..not only that...sometimes you worry about all of this happening to yourself and how do you cope with that......
But I want to put in some praise points! Little John is doing really well after his transplant and his platelets are in the 400,000's! Praise the Lord...keep praising Him for that!
My sister, Liesl, is 19 weeks pregnant today! Yay! I am going to be an Aunty! Isaac will have a cousin! They had their detailed ultrasound just this week which went well! I am excited...and I know Liesl is excited....aren't you sweetness? I have not shared on here yet that Liesl is going to have a baby! This is uplifting and good news in our family...we are all very excited....
Isaac did a pooh in the potty on Friday! Yay! And we danced and sang a little about it...he got two stamps and had a piece of cake.....it was a joyous time!
I am hoping to do a 8 1/2 hour shift on Friday in Day Surgery! In fact...I am doing it...I am believing that Jesus will make me well enough to do it. I have not worked much at all lately and I don't want to miss out on this permanent shift! So please pray I can go to work!
Isaac went to kindy/day care for the first time Friday morning and had a blast...my little man is growing up...I was a nervous wreck that day! Isn't it funny how you feel so protective over your little babies!
Well, I need to go. Bless you all and I will talk with you all soon.
Love Charisse
--------------------------------------------------------------------------------
Monday, June 12, 2006 6:09 AM CDT
Hello All,
well I didn't really enjoy my weekend. I have been sick all weekend and didnd't get to church and have not done much actually...but feel miserable...well try and laugh and have a good time...but you still feel miserable.
Isaac is feeling good again. He and Alan had a good daddy/son bonding time this weekend. Because I was really too unwell to do much, Alan and Isaac went out shopping and went on a train for a ride and went to church together and stuff...I stayed at home.
Last night was a shocka of a night. I was feeling very distressed last night. I have been feeling very overwhelmed by somethings the last couple of weeks and sometimes this hits me and I feel panicked and feel very distressed...you start crying and feeling weird...panic attack..they are horrible and I don't need them when I feel so awful already. My whole mouth is affected by mouth sores and ulcers and swelling ...I can hardly brush my teeth. I have been using cotton buds to help do my teeth and my special mouth wash of course...so because of pain and a bit of distress...well I was really distressed...I didn't end up falling asleep until around 4am this morning and so I feel very tired tonight and pray that I sleep...I need my mouth to heal and I need to be able to look after my energetic child!
Alan has comes down with something today and is feeling pretty rotten as well! My whole family has been sick!
Thanks to those who have been praying for me...it is much needed.
Please continue to pray for the FA families who all seem to be getting hit with one challenge or another! Sometimes it really feels crazy!
Please keep Robbie and Brenda in your prayers. I have not heard where things are at since last week...but they need your prayers.
Other people who need prayer...Ben Hilton, Nicholas Boggs, Nina Altmann and many more.
Bless you all and I hope you have a good week!
Love Charisse
--------------------------------------------------------------------------------
Thursday, June 8, 2006 8:22 AM CDT
Quick update,
did I say that Isaac had croup last week...he is now recovering but has a bad cold the poor love.
As for me...those abcsesses that I had have almost gone...Praise the Lord....but I have a bad, bad cold. I feel wiped out...I also have what looks like an ear infection and the respiratory infection that is going around and more normal ulcers have popped up in my mouth...hence I am on more antibiotics.....the state of my immunity cannot hold this up on its own with the amount of stress that my mind and body have been under. Please pray that I don't have my throat swell up and close off like last time and had 40 degree C temperatures.....I couldn't swallow anything to help my temp.....I hope that this doesn't get to that.
My haematologist has been away so my GP who is an ex-paed has been treating me...he is excellent...but it is good that I get in to see one of my faithful paed doctors tomorrow...who is actually Isaac's paed...just that he helps me out as well.
So much is going on....as I said another time....we have started a charity/organisation called FA Australia and one of our members is in a serious situation. I have permission to share from the family. Ben Hilton is a young man of age 22 (corrected) who lives in Australia and he has FA and they got a sudden, out of the blue shock to find a tumor in his brain...everything needs to be double confirmed but it may not be operable...but we will need to wait to hear what they have to say. Please, please, keep these people in your prayer...they went into hospital for something else and this was discovered....a huge shock...they are such a sweet and dear family.
Please continue to pray for Nina and her family...she had brain surgery this past week or two.
Pray for Nicholas...he has been having allergies to antibiotics and he needs these drugs to help him be well a lot of the time...we would hate for him to develop an allergy to most antibiotics.
Pray for Ryan who is looking at a second transplant....
Pray for Little John....and thank God that he is doing well.
Pray for Robbie who is on a ventilator and in critical condition....please lift them up in prayer.
There are many more children and adults who need prayer. Let us ban together and pray for them.
Bless you all,
Love Charisse
--------------------------------------------------------------------------------
Monday, June 5, 2006 8:53 AM CDT
Good Evening,
thanks to those who have been signing the guestbook and praying for me. My ulcers are still here....I went to the doctor and he described them to be more like abcesses...so I have been on oral penicillin antibiotics and it seems to, may be, be improving...but I still feel very miserable. I also woke with a yucky cold today. I am sure that all this has been set off by that stress a couple of weeks ago.
I would like to thank God for Nicholas...he is over the Pneumonia...or at least on the mend. Please keep him in your prayers.
Praise God for Little John and how well he is doing since his transplant.
Also I have a few prayer requests tonight....dear Robbie...he is in critical condition and really needs our prayers...Please pray for God's divine intervention and pray for Brenda as well...his mum.
Please pray for dear little Nina and Rachel, Tyler and Benjamin as they have had tough news about the tumor in Nina's brain. Please pray for the family! Bless that family Lord!
Ryan in NZ...his results had shown no change and last I heard they were most likely looking at a second transplant. These people are dear to my heart....please pray for them....
Well I am off to bed! I love you all and keep praying!
Love Charisse
Friday 30th June 2006
***UPDATE***
Hello All,
I left last week's update on so if you missed what was happening you could catch up!
It has been a tough week this week. I have felt like I may have gotten a little better but still quite distressed with this very sore throat and swallowing problem. Also, I have been so lethargic. Today is the first time I think I have noticed a drastic improvement with my throat problem. It is less sore and easier to swallow...this is a good thing...however, on Monday I have an endoscopy scheduled just to look down my oesophagus for any nasties...this will help with my anxiety as well. it has gone through the roof! I am still on antifungal.
I had my infusion today. My levels last week of the IgG in the blood were really low and I am relieved I had my IVIG infusion today. I am praying I will not have a bad reaction. I tried to stretch the infusion back to 6 weekly, but with all this sickness and really low IgG levels....we are back at 4 weekly infusions. I should improve in the sickness level. Hoping my platelet count was only really, really low because I was really sick.
Isaac has been vulnerable all week..does not help when he sees me so distressed.
Also I have been really grieving over my cat...it has brought so much emotion about death out of my head...I have struggled with constant weeping during the day..the type where you try and stop it but it comes...
The autopsy of Jemima, our cat.....I can't believe what actually caused her to be so sick was this...it really made me angry and upset. She had a puncture wound in her intestine which had been there for 2 weeks from a foreign body...it had started festering and just became an out of control infection...no wonder no x-rays or ultrasounds could pick anything up...no wonder...we would have liked to have a go at fixing her...but we didn't know what was going on and she was getting really sick and we had already spent so much...I have actually felt regret about her dying...all I can do now is just let myself grieve...we will get another dear little kitten...we still have Matilda, our 3 year old cat....
So that is that......thanks for checking up on me!
Love Charisse
**********
Good Evening all,
it is Sunday night here. It has been a rough week. Firstly, my deepest sympathies and love to Brenda and her family. Robbie has now let go and is free of FA. Please support them and pray for them as they go through this hard journey. We love you guys.
As for an update on my family.....I want to talk about my cat...I know that my cat is nothing compared to that of which families are going through in losing their loved ones.,...so please know...for the sake of these families...I don't want to make any of this sound worse than losing someone you love......I am now going to update what happened this week in our familiy.
Our much loved cat, Jemima, died on Wednesday night after 5 days of being in hospital. Her wbc showed that she was seriously sick and we needed to open her up to see what it was...but were not guarenteed that she would live after all that....we had to let her go....we will find out what happened though..waiting for results...she was only 5 years old...Jemima has helped me throughout tough times with FA....sometimes an animal becomes your closest friend when you have down times...she cuddled me, let me cry on her and I loved her....I am very sad that she is gone. We told Isaac...the first night it didn't seem to register...but the next day he asked me and I told him the simple truth....he went real quite and leaned his head against his seat.....the only question he asked was "what about mummy being sick?"...my heart broke...I was hoping he was only referring to my cold...not the long term stuff and so tried to explain appropriately...poor sweet heart....I had to...... encourage him that we would go and buy a new baby cat for him.....that brightened his mood...but I have noticed some separation issues and I think he is grieving a bit over the cat. Poor love...Jemima was his favourite cat!
ok, besides that....I have been really unwell...let me give you the run down. I had ulcers in my mouth real bad. Well just over a week ago...I started getting a really sore throat and thought, "on no"...this has happened once before...in December...I got so sick with 40 degree C temperatures and in bed...not being able to swallow...I was so sick.,..well due to the ulcers and stuff I was on antibiotics...and then this happens...well my neck swelled up....I feel like my oesophagus is blocked off...I cough and throw things up...I can't swallow or eat properly...it has been unbelievably painful...rolling and crying on the floor.....rushed to the haematology clinic....platelets seriously down and scary......and my haematologist is off sick...other doctors unsure and being difficult...finally my son's paed helps out...my GP suspects fungal infection....but still really sick....finally my haem is back on board and they think it is a superficial fungal, candida...on antifungal and antibiotics.....if it is not better by Tuesday.,...on an antifungal that treats systemic infections...my neutriphils are 1300...praise God over 1000...but still low enough to make a fungal infection a little difficult...now if this big antifungal drug doesn't get rid of things...an endoscopy to see what is happening....and you know what I hate about FA...is that you always have to rule out a tumor.....FA patients always have some kind of cancer to check for...so treatment and diagnosis becomes scarier! I hate that....we just need to be safe....but because I have had this before and no difficulties inbetween...I am not jumping to any conclusions....but I still need to be careful.....I actually feel really unwell...faint and dizzy and my ears are piercing pain and have fluid on them and blocked...I still have a cold and a cough.....I have actually been unwell....so this is not unexpected and I have been on 4 lots of antibiotics...with a lower neutriphil count...fungal infections are to be expected...so I refuse to dwell on the worst...cancer...but it does worry me as it would anyone else. I just want to feel better and get rid of this pain....now my haematologist tells me that this type of candida that I have actually causes heaps of pain and they usually manage it with morphine...but I don't wish for that...another thing was to sedate me enough to make me less tense and lie in bed and rest for a week...but I don't want that either...hmm..what will my doctor think about all that this week.
So that has been my week....quite full on!
I have my infusion in a week...I extended my infusion by 2 weeks for the last 2 times...I hope that didn't make a difference with the infections I have had...I need to see my levels.....
Then in Two weeks we will be spending the weekend with an FA family in Syndey...the Rodwells...we are excited about that...we are also attending a Christian conference...Alan and I have not given up on the promises that we know and believe God has given us and the miracles He has promised us.
My sister looked beautiful today at 20 weeks pregnant!
Well, that is all for now....please keep Brenda (Robbie's mum)...in prayer. Please keep praying for Nicholas' miracle...keep Will in prayer with his trial....Ben Hilton doesn't have a tumor....YES! Ben Hilton is in Sydney, Australia...they had a terrible scare when he started having seizures...for a while there they thought he had a brain tumor...praise God it is not that...but demyelination of the neurons instead..I won't explain that....pleae pray for Nina Altmann who does have a bad brain tumor.......
I need to go...please pray for me.......
Love Charisse
--------------------------------------------------------------------------------
Sunday, June 18, 2006 6:29 AM CDT
Hello Everyone,
once again I thank you for your prayers....believe it or not I am sick again. I think I have re-caught something because I cannot swallow very well...it feels like I have a huge graze and apple in my throat and I have begun coughing more and feeling tired. I need it to go away...I have had enough. Although I should not complain as I know there are many FA families that are having a harder time than me at the moment. Alan and I are praying for those FAmilies. Please keep Robbie and Brenda uplifted in prayer. The last I heard, Robbie had taken a turn for the worst and I don't know where things are up to since the weekend...that family really need our support, love and prayer at the moment.
It is a relief to know that it is not just my immunity that is causing me to be suseptible to sickness right now. This is one of the coldest winters we have had in Australia for a while and almost everyone I know is sick. My mum and dad, my sister is actually quite unwell, Alan is also sick with this sore throat and cough....lots of people at church are away...everyone seems to be sick...not just mildly sick...but sick, sick. The GP did say there is a strain going around that is really putting people in bed even though they may not have an immune deficiency...so I am not the only one...It is amazing...I don't think I have seen so many people sick at the same time at winter.
Along with that, it seems that our cat, Jemima, has joined in on this sickness as well. She is actually seriously sick and yesterday had to be hospitalised. I know she is "just an animal" as some would say...but she is a very special part of our family and Isaac adores her! So of course it has made us all emotional dealing with her being sick. The worst part is that we don't actually know what is wrong with her yet....she was not responding to antibiotics at home and seemed to be declining....got severely dehydrated and ended up in hospital having IV therapy and x-rays and stuff....she may have something terminal now...they are not sure....but if she does...we may need to say "goodbye" to our family cat...as I said she isn't a person...but this is upsetting for us since we deal with so much emotion with FA and circumstances,,,this really hits your vulnerable emotions. I pray that she is going to pull through and have nothing too serious. I don't know! We first need to diagnose what she has before we can make a decision about anything! So she is still in hospital. We took Isaac to visit her today and he was really happy to see her (Isaac is 3 1/2 years old).
Well, please keep praying for FA families...keep praying for Nina, Robbie and his family, Nicholas who had some sniffles, Will in his trial, Ben Hilton in Australia (still trying to work out this probable tumor...and now querie infection in the brain) and Ryan who is going for a second transplant....there are plenty more..please keep praying for them.
Please keep praying for me...my mouth is still not healed completely from these ulcers....I have many appointments this week. I struggle with seeing FA families go through much and because I have FA myself I tend to feel very overwhelmed and extremely grieved..not only that...sometimes you worry about all of this happening to yourself and how do you cope with that......
But I want to put in some praise points! Little John is doing really well after his transplant and his platelets are in the 400,000's! Praise the Lord...keep praising Him for that!
My sister, Liesl, is 19 weeks pregnant today! Yay! I am going to be an Aunty! Isaac will have a cousin! They had their detailed ultrasound just this week which went well! I am excited...and I know Liesl is excited....aren't you sweetness? I have not shared on here yet that Liesl is going to have a baby! This is uplifting and good news in our family...we are all very excited....
Isaac did a pooh in the potty on Friday! Yay! And we danced and sang a little about it...he got two stamps and had a piece of cake.....it was a joyous time!
I am hoping to do a 8 1/2 hour shift on Friday in Day Surgery! In fact...I am doing it...I am believing that Jesus will make me well enough to do it. I have not worked much at all lately and I don't want to miss out on this permanent shift! So please pray I can go to work!
Isaac went to kindy/day care for the first time Friday morning and had a blast...my little man is growing up...I was a nervous wreck that day! Isn't it funny how you feel so protective over your little babies!
Well, I need to go. Bless you all and I will talk with you all soon.
Love Charisse
--------------------------------------------------------------------------------
Monday, June 12, 2006 6:09 AM CDT
Hello All,
well I didn't really enjoy my weekend. I have been sick all weekend and didnd't get to church and have not done much actually...but feel miserable...well try and laugh and have a good time...but you still feel miserable.
Isaac is feeling good again. He and Alan had a good daddy/son bonding time this weekend. Because I was really too unwell to do much, Alan and Isaac went out shopping and went on a train for a ride and went to church together and stuff...I stayed at home.
Last night was a shocka of a night. I was feeling very distressed last night. I have been feeling very overwhelmed by somethings the last couple of weeks and sometimes this hits me and I feel panicked and feel very distressed...you start crying and feeling weird...panic attack..they are horrible and I don't need them when I feel so awful already. My whole mouth is affected by mouth sores and ulcers and swelling ...I can hardly brush my teeth. I have been using cotton buds to help do my teeth and my special mouth wash of course...so because of pain and a bit of distress...well I was really distressed...I didn't end up falling asleep until around 4am this morning and so I feel very tired tonight and pray that I sleep...I need my mouth to heal and I need to be able to look after my energetic child!
Alan has comes down with something today and is feeling pretty rotten as well! My whole family has been sick!
Thanks to those who have been praying for me...it is much needed.
Please continue to pray for the FA families who all seem to be getting hit with one challenge or another! Sometimes it really feels crazy!
Please keep Robbie and Brenda in your prayers. I have not heard where things are at since last week...but they need your prayers.
Other people who need prayer...Ben Hilton, Nicholas Boggs, Nina Altmann and many more.
Bless you all and I hope you have a good week!
Love Charisse
--------------------------------------------------------------------------------
Thursday, June 8, 2006 8:22 AM CDT
Quick update,
did I say that Isaac had croup last week...he is now recovering but has a bad cold the poor love.
As for me...those abcsesses that I had have almost gone...Praise the Lord....but I have a bad, bad cold. I feel wiped out...I also have what looks like an ear infection and the respiratory infection that is going around and more normal ulcers have popped up in my mouth...hence I am on more antibiotics.....the state of my immunity cannot hold this up on its own with the amount of stress that my mind and body have been under. Please pray that I don't have my throat swell up and close off like last time and had 40 degree C temperatures.....I couldn't swallow anything to help my temp.....I hope that this doesn't get to that.
My haematologist has been away so my GP who is an ex-paed has been treating me...he is excellent...but it is good that I get in to see one of my faithful paed doctors tomorrow...who is actually Isaac's paed...just that he helps me out as well.
So much is going on....as I said another time....we have started a charity/organisation called FA Australia and one of our members is in a serious situation. I have permission to share from the family. Ben Hilton is a young man of age 22 (corrected) who lives in Australia and he has FA and they got a sudden, out of the blue shock to find a tumor in his brain...everything needs to be double confirmed but it may not be operable...but we will need to wait to hear what they have to say. Please, please, keep these people in your prayer...they went into hospital for something else and this was discovered....a huge shock...they are such a sweet and dear family.
Please continue to pray for Nina and her family...she had brain surgery this past week or two.
Pray for Nicholas...he has been having allergies to antibiotics and he needs these drugs to help him be well a lot of the time...we would hate for him to develop an allergy to most antibiotics.
Pray for Ryan who is looking at a second transplant....
Pray for Little John....and thank God that he is doing well.
Pray for Robbie who is on a ventilator and in critical condition....please lift them up in prayer.
There are many more children and adults who need prayer. Let us ban together and pray for them.
Bless you all,
Love Charisse
--------------------------------------------------------------------------------
Monday, June 5, 2006 8:53 AM CDT
Good Evening,
thanks to those who have been signing the guestbook and praying for me. My ulcers are still here....I went to the doctor and he described them to be more like abcesses...so I have been on oral penicillin antibiotics and it seems to, may be, be improving...but I still feel very miserable. I also woke with a yucky cold today. I am sure that all this has been set off by that stress a couple of weeks ago.
I would like to thank God for Nicholas...he is over the Pneumonia...or at least on the mend. Please keep him in your prayers.
Praise God for Little John and how well he is doing since his transplant.
Also I have a few prayer requests tonight....dear Robbie...he is in critical condition and really needs our prayers...Please pray for God's divine intervention and pray for Brenda as well...his mum.
Please pray for dear little Nina and Rachel, Tyler and Benjamin as they have had tough news about the tumor in Nina's brain. Please pray for the family! Bless that family Lord!
Ryan in NZ...his results had shown no change and last I heard they were most likely looking at a second transplant. These people are dear to my heart....please pray for them....
Well I am off to bed! I love you all and keep praying!
Love Charisse
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